Thursday, January 28, 2010

Max's ENT appointment was Yesterday. He confirmed the tube was still in on ear but was out in the Right ear. The right ear is the one that has been draining. It still had goopy stuff in it, but not draining.

Since Max's ear canals are so small they needed to be cleaned out to put the meds in better. Max does awesome with the doctor looking in his ears but once Max knows his ear will be cleaned out, it is battle time! He needs to lay on this table so the ENT can clean his ear. One nurse holds Max's face still (as best as she can) while me and another nurse hold his arms and legs and his thrashing body. We still weren't strong enough to keep him still for very long. The ENT did get some of the stuff vacuumed out of his ear but i don't think he got it as clean as he wanted.

We are to use drops for 5 day and that should clear it up. Now imagine the above with just me and Max. Trying to convince him he needs drops is not happening. I usually try to add drops after he is asleep. But he needs drops 3 times a day. Guess what-- I forgot last night and this morning. Bad mommy, I know.

The good news is that the ENT did not mention tubes yet. So fingers crossed this just clears up by itself.

Monday, January 25, 2010

At school Max uses the Edmark program for reading. He has done really well with this so far. He can read/sign over 150 words. Along with the program comes little books. School will make copies and send them home for me.

Max loves reading these little books. He can read them very fast.

Here is a sample of one....

They have simple text but every single word is one that is already mastered.Here is Max reading some books to me....

He then can get very silly and start 'signing' a different word then starts laughing. It's his way of joking. He thinks it is freakin' hilarious! He will do it over and over again. Laughing more each time.

Here is Max reading one of the books. Ignore Ike wailing in the background..

Over Christmas break Max had his first eye appointment since getting his classes. He had his glasses for about 4 months. I was told he didn't need to wear them but it is preferred. The Dr said Max will (should) outgrow this in his adolescence. Some doctors say there is no need to wear the glasses but others say it is still a good idea. If it is a big struggle to have the child wear glasses then don't bother with it. Max does awesome with his glasses. When wearing them his eye doesn't turn in but as soon as he takes them off and focuses on something close-by, the eye is turned in. So he will be wearing his.

About a week ago Max came out of school without his glasses on. I asked where they were and was told they were in his lunch box because they broke. Nice. I was in the drive-thru lane at school so it is not a place to stay and chat with a teacher/therapist. I figured the ear piece broke off because it was pretty close to just falling off. They have been bent too many times. Metal can only bend back and forth so many times before snapping off. I checked out the glasses to find it was only a screw that was missing.

We were out of town that weekend so I didn't get them fixed. I got them fixed a couple days later and gave them to Max after school. Within 2 hours they were broken. Really broken this time! Grr!!!

The store was already closed for the night. I decided to email Specs4Us and see if they were covered at all. If bought on-line they are covered for a year for defects. I emailed and shortly afterwords I got a reply from Maria, the lady who 'invented' the glasses. She said if the store did not do anything to help me then to let her know and she would take care of it. Wow. How many businesses/ people do you know like that? Very few, if any.

The next day I called the store and yes, they would replace them for free. They are covered for a year. They would even put the lenses in the glasses while we wait there. After school I take all 4 kids up to the optical shop. I was not looking forward to it.

We get there and the lady goes in the back to look for the new frames. The kids are still behaving. The lady asked if Max had any other glasses to wear. Not a good sign, I think. No, he doesn't. Well, guess what? The store is out of the frames we need. Why could she not have checked on this when I talked to her earlier that day?? That would have been way too easy, apparently. She said they would have to order the frames. Since she would have to order the frames she was just going to start fresh. So Max will be getting new frames and lenses. His lenses did have a couple minor scratches but nothing too major to effect them. But OK.

So hopefully this week Max will be getting his new glasses (again!) and lucky me, gets to take all 4 kids to the optical shop (again!). I hope they behave again while there.

Friday, January 22, 2010

I can NOT stand that sound. It drives me crazy. It is the same as fingernails going down a chalkboard.

So a few weeks ago Sam started grinding her teeth. It irritates the heck outta me. I tell her stop. I tell her she will ruin her teeth. I tell her if she does it while sitting next to me she has to leave the room (or I leave the room). Grind, grind, grind.

I could not figure out why she started this all of a sudden. Were her teething hurting? She didn't complain of anything... and she likes to complain.

So a few days ago she wanted help brushing her teeth. I usually prefer to help since I know they do such a poor job at brushing their own teeth. I was brushing and then I saw why she is doing the annoying teeth grinding thing. She is getting her back molars in.

Max used to grind his teeth has a baby when he was getting new teeth. Now I am hoping those molars come in fast and hopefully the grinding will stop.

Thursday, January 21, 2010

I had my cholesterol testing Monday. It came back as high- which I already knew! It was 352!! LDL was around 225. wow! At least it came down from the 400's though! I am now on meds. exciting, I know. I am getting too old!

So when the nurse did my blood draw, she sucked at it! It freakin' hurt. I don't like being poked anyway but I can handle it as long as I'm not looking at it. It did hurt pretty bad though. She didn't warn me or even say anything to me for that matter. Once I left the office and got in the car my arm had a huge lump on it where she had stabbed me. It also already was starting to bruise. The lump went down as the day went on but my bruise got bigger.

2 days after my stab to the arm, my arm looked like this....I'm not very good at getting pictures of bruises but you can at least see it in that picture. The color is darker in real life.

Wednesday, January 20, 2010

Looking at Reece's Rainbow I noticed Charlie was no longer by Joseph in the most "at risk" category. It looks like Sweet, little Charlie has a family that has committed to adopting him. I am SO happy for him. I have no idea who the family is yet. I am so hoping they also decide to adopt little Joseph. He and Charlie are only about a month apart in age. And of course there is also cutie pie Zhora at the same orphanage. He is younger. He just turned 3 years old. Charlie and Joseph are both 5 years old.

Sweet little Charlie will soon be going to his forever home!

Here is Joseph, still waiting.

And here is little Zhora, still waiting.

I'm happy Charlie has a family now (as long as everything works works out) but I'm sad Joseph and Zhora are left waiting.

Once I see who is adopting Charlie, I'll post it on my blog.

PS..... I had to correct my spelling of Joseph all through this post. We spell our Joe's name Joesph. Yes, it's different. there is a reason. Max is from Maximus, Sam is from Samantha and Joe is from Joesph. All 3 have the nickname of their first 3 letters. Poor Ike is just Ike!

Monday, January 18, 2010

I am always wanting more patience. Who isn't? I do get told that I have the patience of a saint. I don't think so. I am just very easy going and don't stress over little things. I think most parents that have a child (or children) with Down syndrome know that patience is required multiple times during the day. They generally take their own sweet time doing whatever it may be. It makes you practice that skill of patience. Or maybe you get completely stressed over the situation. Maybe you learn that getting stressed just makes it take SO much longer.

I had a doctors appointment this morning. I was going to get my cholesterol checked. Apparently high cholesterol runs in my family. About a year and a half ago we applied for a new life insurance plan. During that they do blood work. My cholesterol came back high. I go to my doctor to get tested. It came back insanely high. like over 400 high. It should be below 200. I want to say it was like 432 or something. It wasn't the good stuff either. My LDL was pretty high. However I was still breast feeding Ike and the doctor felt waiting a year wasn't going to hurt anything. He also said even if I ate a completely vegan diet and run marathons it would not be changing my cholestrol numbers too much. I already don't eat much meat. So it is not like I am a big meat lover and eat red meat all the time. Ike finished breast feeding towards the end of Summer/beginning of Fall and I am just now getting to the doctor for re-testing. I hate the idea of having to take medicine every single day. I guess that truly means I'm getting old! I also hate pills so I completely dread having to take medicine. Maybe by some miracle my results will come back normal! I am not holding my breath though.

Today the kids are out of school for MLK day. All 4 got to hang out with me while I went to the doctor. We get there and Max, Sam and Joe all find a seat and play their leapsters. I check in and seat down with Ike. The older 3 looked like perfect little angels. It didn't last long. Ike was pointing to the doors every time they opened or closed. I was talking to him about that. Max heard me, looked up, saw where I was and came running over to me. He put his leapster in our bag and wanted in my lap. About that time Joe also came running over and wanted in my lap. It all went down hill from there. Joe crying and throwing a fit. He got over it. Then Ike, still by the door was hitting this sign and when he would it made a noise. I put my hand on the sign so it wasn't so loud (think drum). Joe decided this looked fun. He tried it too. Much louder drum sound. I told him to stop, he did not. I said if he did it one more time I was taking his Leapster. He looked at me, grinned and was going for it. Bang! I take his leapster and he throws yet another fit. The kids were testing my patience! In their defensive we were in the waiting room for 50 minutes!! yes, almost a complete hour.

We finally get called back. The kids did OK. Loud at times but for the most part OK. I then go and get my blood drawn, check out and we can leave. However, this building is connected to an urgent care center. The doors connect but they both have their own entrance. Max thinks it is pretty freakin' fun to run around in circles with these doors. I do not! Today he thought Ike would like to try this out. Ike also thought it was pretty fun. They run one way while I go a different. No matter which door I am at they are at the opposite. You know the game. Ike apparently does not know the rules yet. He let me grab him when I got close. Max still ran around. But if I chase him he thinks it's even more fun. I learned that long ago. So I wait with Ike. I am about to go to the car when Max spots us and comes running over to me. They all lost their Leapsters and TV when we got to the car. None of them really behaved well at all (overall).

We went to lunch and they all did great. I even got a compliment about how well behaved they were. I was thinking you are speaking way too soon! But they did fine. I think we get compliments about half the time to go out to eat if not more. Maybe people just notice us more since we have 4 kids with us. I don't know.

We are home now. Sam went to a friends house for awhile so it is just me and the boys. Home practicing patience!

Sam did, in fact, have Strep last Friday when I took her in. She is also on Omnicef for a few days along with Max.

The doctor tested Max's ear fluid that was draining out last Thursday. She wanted to see if it was a resistant strain of something. I got called today and I don't that it was. But interesting in my opinion is that it was a Strep A strain.

His last day of meds is tomorrow. We see the ENT the middle of next week.

Friday, January 15, 2010

I have been neglecting my blog lately! Remember 2 months ago when my new computer (my 2 month old computer) was being replaced by Dell? They had issues finding the right screen for it. They had to build a brand new one for it's replacement. The one I bought was a refurbished one. However, I was told I would have my replacement computer within 21 business days. SO did NOT happen. I called them a few times and they would just say the production line could not find a screen (monitor) that is equal or higher to my current screen. The last time I called them I was on the phone with them for an hour and 12 minutes. Grrr!

So he kept kinda giving me the run around. I finally asked what happens so long and the screen can't be found? He didn't know. "well what has happened to other people when this happened. I'm sure there have been others who waited this long, so what happened with them? What is done after so much time?" He put me on hold for awhile. Came back and said my computer will be ready to ship Jan. 5 (I talked to them Dec. 27 or sometime around then). OK, great.

My husband told me not to believe them. On Jan. 4 guess what is ready to be delivered? yeah, my computer- finally!! However, we missed the fedex guy so we got it the next day. My husband was going to swap computers with me so he got the new one and fixed it up with his stuff. I now have his (which is still pretty new, it's maybe 6 months old) and ready to fix it up with MY stuff. I hate this part. It takes forever. But luckily most programs I want are already installed on Pete's desktop, so I just have to copy them to mine. Still a pain.

So my computer went bad Nov 17 and it took till the beginning of January to get the replacement.

Other news, the kids were all on meds over Christmas break. They all got better. Until 2 days ago and Max has fluid coming out of his ear again. I take him in yesterday and he has infections in both ears. He is now getting Omnicef (the expensive med!) and will see his ENT next week. I'm guessing yet another set of tubes is in Max's near future.

Sam complained last night that her throat hurt. This morning same thing. I gave her the choice of doctor or school. She picked doctor. That is saying something because she HATES being tested for strep. (who doesn't.) Sam now has an appointment this afternoon. Sam does not really act all that sick though. Fingers crossed Joe and Ike stay healthy.

Now I have a couple of questions for you.1. Has anyone ever gone to a seminar called DownsEd? It is UK based. They will be here in February. Max's para is planning on going and wanted to know if i knew anyone that has gone.2. Since Max will more than likely be getting new tubes soon I was wondering about some other parts of his body. We saw a urologist a couple years ago because Max's testicles don't stay down. His pediatriction referred us. The U doctor said Max is normal and his 'stuff' is doing what it should. Well Max is now 8 1/2 years old. I still notice his testicles are up more than down. granted I don't see this as often since he doesn't wear diapers. Anyone have any experience or knowledge about this? If he needs something done I would rather have it done all at once.

Monday, January 4, 2010

My husband wanted to see the movie Avatar. I knew nothing much about it. I knew it was a movie and had blue creatures in it. That was about it. So his plan was to see it Saturday morning at 9:50- to beat the crowds for the day. In case you don't know, 9:50 is early for us to be somewhere. So Pete wakes me up and we get the kids all up, dressed, half-fed and out the door at 9:50. Yes, the movie was starting at 9:50. We get there and Pete drops me off to buy the tickets. It was 5* outside at the time by the way. I wait in line to find out the movie is sold out until 10 PM that night. Nice. we got he kids up and out in this freezing weather for nothing. I call him up before he unloads all the kids. They were out of their seats and all bundled up ready to hop out of the car. We decide to buy tickets for Sunday, same time. Then went and ate breakfast and came home. Call it a test run!

Sunday we get up a little earlier knowing it will be crowded. We needed to get 6 seats in one row. We got there around 9:20-9:25ish. The theater was crowded but not too bad. We had no problem getting seats all together.

The movie was in 3-D and on an Imax screen. Did you know the movie is roughly 3 hours long? A long movie for 4 little kiddos. We made one bathroom break. I told them that was all they got. They did pretty good. Ike was antsy and Joe had his moments but overall, they were good. The movie theater was very crowded by the time the movie started. Not every seat was taken but there was not many left over.

We all thought the movie was very good. The 3-D effects were done very well and I'm sure the Imax screen made it even better. Ike never wore his 3-D glasses. Joe wore his off and on. Max wore them for over half the movie and Sam wore hers for most the movie.

The movie was good in the fact that it kept your attention. It did have some bad language and some violence. I was told it had mild violence. I would saw it was maybe a little more than mild. At least for 8, 6, 4, and 2 year olds. It is rated PG-13.

I'm sure it won't be anything like the 3-D Imax experience when it is released on DVD. If you are wanting to see the movie, I say go see it now while it's in the theaters. We paid $54.00 for all of us to go see this movie. I'm glad it was good and the $54 was not a complete waste!

Friday, January 1, 2010

Sam was sick the whole week of Christmas until Thursday morning when we were going to open our presents. Amazingly she felt well enough to open gifts and see what Santa brought. Yes, Santa came a day early to our house. She was fine all that day and Friday morning. We went to the grandparents house Thursday and stayed until Sat. evening. Sam was fine until the cousins left from grandma's Friday around lunch. All of a sudden she is sick again. She was crying saying her ears hurt and her stomach hurt. The weekend she was sick but then felt better and back and forth. Sunday I think all the kid were sick. There was sleeping, there was high fevers and there was vomit. I know you're all jealous. But nobody was deathly sick. Everyone seemed to be sick but then later acted fine. Monday morning Sam again complained her ears hurt. I took her in to the doctor. At the time I was thinking to myself I should probably just have them all seen and save time! Sam had a double ear infection. No brainer. She got meds.

Tuesday there were fevers with Sam and Joe. Max was starting to look all congested and Ike was doing OK. Wednesday I took Joe to the doctor. He had had a fever for a few days and he said his throat hurt. I was thinking possible strep. Wednesday morning while I was getting his breakfast ready he throw up all his chocolate milk and Tylenol I just gave him. On the couch. Sam was sitting next to him. watched him puke and then puked herself. Again, ON the couch. Yay- I get to clean the couch and still have a puke smelling couch. Wednesday afternoon doctor appointment and Joe test positive for Strep. Meds for Joe.

I got home Wednesday evening from picking up Joe's meds and Ike was crying saying his ear hurt. He refused to take Tylenol. He was sure it was some kind of poison I guess. I got him to sleep on my chest while I watched TV. Every time he woke up he cried. So I guess I would be taking Ike in on Thursday. I was thinking of just having them see Max as well. He is still congested and looks awful. He acts fine though. But when Max gets all snotty like that it tends to end in an sinus infection. I was pretty sure they would be closed Friday since Doctor offices are usually closed for New Years Day.

Thursday morning I noticed Max has watery blood draining from his Right ear. ouch. But Max has had several tubes so I guess they work. However, one tube is out and one is possibly still in his ear. I check out the hearing test paper work we had done about 2 weeks ago to see what tube was out. It is his Right tube that has fallen out. So Either his ear drum ruptured OR there was still a hole in his drum from the tube. I don't know. SO, Max will also be seeing the doctor.

Thursday afternoon.... Ike has an ear infection. Meds for Ike. Max also has at least one ear infection. The ear with the tube possible still in they couldn't see the tube but said his ear looked pretty bad. Also --- he possibly has STREP! Seriously? They didn't test for it since he was getting meds for his ears anyway. He had his tonsils out last year (Sept. 2008) b/c he got strep all the time. However, I don't really think he had strep. Max generally gets sick with strep. As in, he sleeps and pukes and gets the 'strep rash' on his body. I do know it's possible to get strep with the tonsils out. But still!

Giving Ike his medicine is like torture. I am hoping he warms up to it within a couple of days and not on the 9th day!!

Today (Friday) they all are acting much better. I have a cold and my throat did start hurting a couple days ago but I'm pretty sure I can survive it. Pete has a cold that he is getting over right now.

I am hoping after all the medicine going through our house is over that the kids decide to stay healthy for a little bit. Fingers crossed!